#WAMES_800 – How can I donate?

It has been great to receive enquiries asking how people can donate money to WAMES.

We would like be able to say that we can accept it in any format. In practice we would struggle to know what to do with cryptocurrency and we have just discovered our online donation service has ceased operation!

We are exploring how to expand our options and currently suggest:

• Send the Treasurer a cheque or postal order
• The online donation service we used in the past no longer operates so we are looking for a new one.
• Please Gift Aid your donation
  If you are a UK taxpayer, every £1 you give will be worth 25p more to us, at no extra cost to you, if you Gift Aid it. You can download the Gift Aid form.
• Donate when you pay online with PayPal – select WAMES
• If you live close to a WAMES official, drop an envelope of cash through their door!
• By bank transfer or standing order.     Account name:

Welsh Association of ME & CFS
Account Number:  76392081
Sort Code:       09-01-55

• We are exploring other possible donation methods, such us FB, twitter, texting but it will take time to set those up – maybe you can help us do that?

Find out more:

#WAMES_800 fundraising journey – Join us!

How to get free donations for WAMES – online shopping

#WAMES_800 Fundraising volunteers needed! 

#WAMES_800 Fundraising Journey – First £100 target reached! 

Clinical characteristics of Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) diagnosed in patients with long COVID

16.8% of long COVID patients at a Japanese outpatient centre met the ME/CFS criteria, 51.1% were female. Main symptoms were fatigue and PEM, followed by headache and insomnia. To get a fuller picture symptoms would need to be tracked over a longer period of time and housebound patients included.

Research abstract:

Background and Objectives:

COVID-19 can be serious not only in the acute phase but also after the acute phase and some patients develop ME/CFS. There have been few studies on patients with long COVID in whom ME/CFS was diagnosed by physicians based on standardized criteria after examinations and exclusion diagnosis and not based on only subjective symptoms. The purpose of this study was to elucidate the detailed characteristics of ME/CFS in patients with long COVID.

Materials and Methods:

A retrospective descriptive study was performed for patients who visited a COVID-19 aftercare clinic established in Okayama University Hospital [Japan] during the period was from February 2021 to April 2022.

Results:

Clinical data were obtained from medical records for 281 patients, and 279 patients who met the definition of long COVID were included. The overall prevalence rate of ME/CFS diagnosed by three sets of ME/CFS criteria (Fukuda, Canadian and IOM criteria) was 16.8% (48.9% in male and 51.1% in females).

The most frequent symptoms in ME/CFS patients were general fatigue and post-exertional malaise (89.4% of the patients), headache (34.0%), insomnia (23.4%), dysosmia (21.3%) and dysgeusia (19.1%). Dizziness, chest pain, insomnia and headache were characteristic symptoms related to ME/CFS.

The male to female ratio in ME/CFS patients was equal in the present study, although ME/CFS was generally more common in women in previous studies. Given that patients with ME/CFS had more severe conditions in the acute phase of COVID-19, the severity of the acute infectious state might be involved in the pathophysiology of ME/CFS.

Conclusion:

The prevalence rate of ME/CFS and the characteristic sequelae in the long COVID condition were revealed in this study.

Authors: Kazuki Tokumasu; Hiroyuki Honda; Naruhiko Sunada; Yasue Sakurada; Yui Matsuda; Koichiro Yamamoto; Yasuhiro Nakano; Toru Hasegawa; Yukichika Yamamoto; Yuki Otsuka; Hideharu Hagiya; Hitomi Kataoka; Keigo Ueda and Fumio Otsuka

Journal: Medicina 2022, 58(7), 850; [doi.org/10.3390/medicina58070850]  Published: 25 June 2022 (This article belongs to the Special Issue Advances in ME/CFS Research and Clinical Care)

#WAMES_800 Fundraising Journey is underway

A big thank you to those who have helped us begin our journey.

We have climbed the first step to our target of £800 for next year’s.

The £100 milestone has been reached, only £700 to go!

Every little helps

£800 might seem a large target to people with little energy and disposable cash. There are 13,000+ people with ME in Wales. If just 1,000 of those donated or raised £1 a year we could easily cover our running costs. If more were to give £1 we could begin to carry out additional projects. Every little helps!

Find out more about our Fundraising Journey:

#WAMES_800 fundraising journey – Join us! 

How to get free donations for WAMES – online shopping

#WAMES_800 Fundraising volunteers needed! 

#WAMES_800 – How can I donate?

CVUHB plans to implement ME/CFS NICE guideline

WAMES has been asking Health Boards in Wales what plans they have to implement NICE guidelines, whether they intend to consult with patients and how they think their long COVID service might benefit people with ME. 

Cardiff and Vale’s University Health Board’s Chief Executive Suzanne Rankin shares their plans for improved care for ME with WAMES:

@cardiffandvaleuhb

“As a Health Board the new NICE guidance for ME/CFS have been shared widely across services which support people with ME/CFS and long COVID. Clinicians supporting people with ME/CFS, long COVID and other long-term conditions recognise the concept of energy impairment linked to symptom exacerbation (and strive to embed the awareness within their Treatment and clinical interventions with individuals).

We have a meeting planned between the Executive Directors for Medicine, Nursing and Therapies and Healthcare Sciences to review our current ME/CFS clinical pathway and our services against the recent NICE Guidance.

Training for staff

The UHB has a Rehabilitation Improvement Programme which is focusing on how we can develop our rehabilitation services to ensure we support people with long term conditions to have better access to the help that they need, when they need it. The Rehabilitation Programme is developing ‘A Meaning Full Conversation’ Model of Care which aims to provide education and training across the rehabilitation workforce to support people with advice and strategies to manage common symptoms which may be out of their usual scope of practice. Fatigue, pacing, energy management and post exertional symptom exacerbation forms part of the model.

Rehabilitation services

At a service level we continue to develop our rehabilitation services to ensure we provide people with the education and strategies to support them to manage symptoms including fatigue. This is delivered individually and within a group setting. The group-based interventions help to facilitate peer support and learning from others with similar experiences, and service users have reported that the sessions have been very useful in helping them develop energy management strategies.

Leisure classes

We are also working in partnership with leisure to support us to deliver care nearer to people’s homes. We have trained leisure staff to develop classes and activities to support people who have long-term conditions, and to increase their awareness of common symptoms including fatigue and energy impairment presentations, to help them have the skills and knowledge to work with people and support them to return to increased levels of activity if this is their goal.

Co-production for long-term conditions support

As you are aware, we have also established co-production meetings bringing together people with lived experience of a long-term conditions, health professionals, third sectors and organisations across Cardiff and Vale to work together to ensure we are meeting the populations needs. Representatives from The Welsh Association of ME & CFS Support have attended both events to date and we have really valued their insight and contribution to the meetings.

COVID services

As we recover and reset from COVID as a Health Board we are focused on improving the health of whole population and supporting people with long term conditions to get the help they need. We are currently considering how we can develop our COVID service to broaden its access to a number of conditions including ME/CFS.

Do be assured we will keep you involved and look forward to progressing this.”

WAMES would like to hear from anyone with ME/CFS living in Cardiff and the Vale of Glamorgan about the service they have received since the publication of the revised ME/CFS NICE guideline in October 2021, so we can continue to work towards improving those services. #ImplementNICEmecfs   Contact jan@wames.org.uk

Read what other Health Boards say: Aneurin Bevan; Betsi Cadwaladr; Cwm Taf; Powys; Swansea Bay.

#WAMES_800 Fundraising journey – Can you help?

As WAMES travels along our 8 month fundraising journey we are looking for people with a range of skills and interests to join us.

Help us to climb the first column to our fundraising target!  Any help with raising funding and spreading the word would be welcome, but we would also like help with:

• Expanding our ability to reach people through social media and online platforms
• Identifying novel and ‘free’ ways of getting funding like match funding and crowdfunding
• Interesting businesses in corporate fundraising
• Researching funding options and writing grant applications

WAMES fundraising volunteers work from home with support from our Volunteering Coordinator and the Finance and Communications Teams.  You decide the number of hours you can offer and all volunteers representing WAMES are covered by insurance. Want to know more?

Download more information

Contact Sharon to arrange a chat   sharon@wames.org.uk

Find out more:

#WAMES_800 fundraising journey – Join us! 

How to get free donations for WAMES – online shopping

#WAMES_800 Fundraising Journey – First £100 target reached! 

#WAMES_800 – How can I donate?

Fundraise for WAMES by shopping online

Do you know someone who shops online?

Shopping online is very convenient, avoids the crowds and can sometime be cheaper.  Many of us order food, clothes, household items, holidays or business supplies online and there are thousands of online stores to choose from.

How does this help WAMES?

You can raise free donations for WAMES if you shop at Amazon Smile or through Easy Fundraising.

Over 6,000 major retailers will give from 0.5% – 10% of the amount you spend, to Easy Fundraising, who will then pass it on to the charity of your choice.  Shop through a browser or the app.

Join through our cause page: https://www.easyfundraising.org.uk/causes/wames 

Refer a friend

If you are already signed up to Easy Fundraising, you can refer a friend until the end of June 2022. Earn a £5 bonus donation for your cause every time someone successfully joins and raises £5 as a supporter through your personal link.

Amazon smile

Shop through Amazon’s charitable website and they will give 0.5% of the net purchase price to the charity of your choice. Support WAMES

But, I’m broke!

Even if you can’t shop online yourself you can ask friends and family to support you and WAMES by signing up to online shopping.

OR

Join us as an online fundraising volunteer and help others raise funds for WAMES!    Contact Sharon for a chat.

Find out more:

Find out why we are going on this #WAMES_800 fundraising journey during 2022

#WAMES_800 Fundraising volunteers needed! 

#WAMES_800 Fundraising Journey – First £100 target reached! 

#WAMES_800 – How can I donate?

WAMES is going on a fundraising journey – Why?

We need £800 by the end of March 2023

Our income has dwindled, so we won’t be able to pay our basic bills after this year.

We are not the only charity to be facing problems. A number have been forced to close in recent years. Our fund raising journey is not of our choosing but it is vital if we wish to stay active and avoid a similar fate.

There are many ME organisations in the UK, all with different strengths and priorities. None do what WAMES does. We are the only charity where Welsh residents come together to share information and speak out for the services we need.

Why £800?

Our budget for ‘running costs’ in 2023 is:

• Website £400
• Insurance £300
• Admin  £100      Total:   £800

If face to face meetings return in 2023 then we will need to find further funding  for transport and accommodation, to enable us to represent people with ME.

We will also need additional funding to build a new website, and we will explore all options for this.

How?

Asking people for money at a time of rising prices is not ideal. (A bit of an understatement!) That is why we invite you to join us during 2022. Maybe YOU have the skills we need to help us explore all the different ways that we can raise money which are free, low energy, inspire friends and family to join us or will attract outside funding. You could sign up as a volunteer, send us some ideas or organise your own fundraising action. Join us on our fundraising journey!

Read more:

How to get free donations for WAMES – online shopping

#WAMES_800 Fundraising volunteers needed! 

#WAMES_800 Fundraising Journey – First £100 target reached! 

How to get free donations for WAMES – online shopping

#WAMES_800 – How can I donate?

WAMES launches new Facebook page

A few days ago the WAMES Facebook page just disappeared!

Our volunteer Jacob spent the weekend setting up a new page and over the next month we will be learning how to use it.

Some of the functions won’t be available immediately e.g. the user name is missing (@wamesmecfs).  Please help us share the new location with past and new followers.  https://www.facebook.com/WAMES-105437788854575/

All the messages and contacts we have made over the last few years have also disappeared, so we won’t be able to contact you until you get in touch again.

We’re looking on the bright side – this is a new start, with increased features and functions (eventually)! We will continue to provide helpful information for the Welsh ME community – and anyone else who is interested. Please let us know if there is any way we can improve our use of Facebook, or if you can help supply us with relevant up-to-date information. Contact jan@wames.org.uk